Living alongside of autism can be very, very hard. It is demanding and confusing and scary and weird. It’s easy for me to become negative, and maybe even a little bitter, about my 11-year old son Jack’s diagnosis.
I mean after all, the tantrums! The rigidity! And don’t even get me started on the stimming. Jack is up and bouncing around by 6:00 am every morning, and at 115 pounds, it sounds like a full-grown man galloping through the house.
However, in an effort to be more positive, I have been making a point to notice all of the practical, day-to-day advantages to having the spectrum disorder in my life.
I always know when the next Disney movie is coming out.
I always know if my hair looks bad.
I always know if it will snow on Saturday or rain on Tuesday.
It’s easy to write out my Christmas cards.
I married an Italian man who has an enormous family, and over the years, between college roommates and old colleagues and new friends, our Christmas card list is almost three hundred addresses.
Mostly I have them all organized in a spreadsheet, but every year one of them gets cut off or we add someone new and I can’t remember their zip code, so I just shout over to Jack.
“Jack? What’s the Boucher’s address again?”
“It’s 204 Washington. How can you not. KNOW THIS.”
(Lucky for me, he provides both addresses and snark for free.)
We never oversleep.
We’re never late for the bus.
I never have to fill the humidifier.
About a month ago, Jack had a stuffy nose. Like anything irregular with his body—a loose tooth, a hangnail, hiccups—it made him crazy. So we took out the humidifier and showed him how to fill it up in the sink and plug it in next to his bed.
Voila! A permanent humidifier-filler was born.
Jack is task-oriented. He likes small jobs that don’t involve a lot of steps; washing everyone’s towels on Saturday mornings and making sure the puppy’s water bowl is always full. Once we show him, he will do it forever.
Which brings up the next thing I love about autism.
I don’t ask about the meat mallet.
There’s kind of an unwritten, unspoken rule in our house; the minute any one of our five kids learns how to do something, like zip up their own jacket or buckle into their car seat, they own that job. I never do it for them again—not even once.
See, I am inherently lazy, and my whole goal in life is to do as little as possible.
It’s more than that, though. I want him–and all of my kids–to know how to solve their own problems, to be as resourceful and independent as possible.
It’s a beautiful, amazing thing to watch my kids figure out solutions. Nothing makes me happier. Why, just yesterday afternoon we convinced Jack to go outside and sled with his brother, Charlie, and after about ten minutes he rushed back inside and told me, “I need for. The meat mallet.”
I thought about asking why, I really did. But then I figured, hey, he’s outside, he’s playing, and for some reason he needs a meat mallet.
“Okay, Jack, you know where it is.”
He ran back in with it about a half hour later.
“I needed this. To break the ice. For the sleds were frozen.”
I never forget my nephew’s birthday.
I never forget my anniversary.
I never forget that Michael Jackson died on June 25th, 2009 and it was a Thursday.
I am happy with my age.
At the stroke of midnight on my fortieth birthday, something funny happened to my eyes. They could no longer see anything too close to my face. Now, when I have to read the label on a bottle or a text on my phone, I tilt my head way back and kind of squinch them closed.
I have paper-thin Irish skin that is starting to crinkle in weird places.
No matter how many miles I run on the treadmill, some spots on my body are getting smaller and other places are getting bigger.
And you want to know something? I don’t care one bit. I love knowing I am aging in a normal, predictable arc. I am forty-one years old, and I am grateful for every single second.
Aging is ultimately a good thing.
I worry about many, many things when it comes to Jack, but one question in particular hangs thickly over my psyche like smoke in a casino.
What will happen to him when I die?
Will anyone understand that he needs to read at least three titles on Redbox before he selects the movie?
Or that you can’t talk too quickly or give too many instructions at once because he gets overwhelmed and then he gets mad?
Will anyone remember that he doesn’t know how to whisper? He can talk, he can shriek, he can shout and cry and wail, but he has never learned to whisper, and you should never bend your head close to him because he will scream his “secret” and you will practically be deaf?
Or how, when it comes to baking cakes or banana bread, it’s more about the process–the measuring and the mixing–than the outcome?
Leaving any one of my children too soon would be hauntingly, devastatingly awful—but leaving Jack worries me the most.
I know, there are a lot of people who love and know and care about him—his father, for starters. Aunts and uncles and teachers and grandparents. But I am his mother.
I want to live until I am eight hundred years old. I want to be here forever to safeguard this boy’s precious heart for as long as I can. And if I have to squint to change the channel on the remote control, well, that seems a small price to pay.
I’m not afraid to ask for help.
I’m not talking about asking my friend Audrey to get my kids off the bus because I’m running late, or texting Joe to pick up pizza because I’m too tired to cook—although I’m not afraid to ask for that kind of help either.
I’m talking professional help.
When I need new brakes on my car, I go see a mechanic.
When I have a terrible cold and my cough won’t go away, I make an appointment with my doctor.
When my son is rocking in his bed all night long and afraid to get on the bus in the morning because he thinks there might be Brazilian spiders hiding under the seats even though we live in New Hampshire and we don’t have those kinds of spiders, I go to a psychologist.
When my marriage is straining under the weight of five kids and autism and Brazilian spiders, we go see a marriage counselor.
These people are good at things. They know what they’re doing. They fix our cars and remind us we love each other and suggest we get Jack a book on spiders so he can learn more about them and whether they live where it’s hot or cold.
I am practically the Sherlock Holmes of the spectrum Disorder.
By this point, I’m a good detective. Whether I realize it or not, I am always looking for clues to better understand this tall, mysterious boy with the soft brown hair.
From his unusual speech patterns to his body language, his sleep habits to his obsessions, for over a decade I have been deciphering, decoding, and interpreting my unusual son named Jack.
I know the phrase, “Mom. For me my brain,” means he has a headache.
And, “When for you. To go to the store,” means he’s out of something he needs, like toothpaste, or baking soda, or turtlenecks.
I know I have to stop and count to ten after I ask him a question, so I give him enough time to search for words like the proverbial needle in a haystack.
Yet there is still so much about him I do not know. Some days, I feel like I’m drowning in the deepest waters of the ocean and I don’t know what he wants or thinks or feels. Then I find a clue, and it’s as though, for just one second, I am riding atop the tallest wave.
Take last week, for example, when I opened my laptop to shop for some new boots.
I noticed that the IMovie program was open again, and even though I hate it when one of the kids gets on my computer, I knew Jack had been there.
I clicked on it, and I saw that the boy who cannot whisper found a way to tiptoe, and leave me the modern-day version of a message in a bottle, bobbing along on the wide, open sea.